The Ehlers-Danlos Blog

Sunday, November 11, 2012

TORONTO—For American families struggling to cope with diagnosis and treatment of Ehlers-Danlos, our fragmented health care system can be a nightmare. From primary care physicians who know little about the disease—and even less understanding of how to treat it—to insurance companies who withhold approval for expensive diagnostic tests, specialist appointments, and treatments, the idea of a single-payer national health care system seems idyllic. Yet, every time Americans who are fed up with an increasingly complex, expensive, and often infuriating for-profit, employer-based system, the county-by-county vagaries of Medicaid and other government-sponsored health insurance—or, the financial devastation of being uninsured—Canada or the UK produces a horror story that makes use question the "national health care" model.For Canadian Erika Crawford, the pain of Ehlers-Danlos was exacerbated by both Chiari Malformation—and a seemingly uncaring Ontario health care bureaucracy, reports the Toronto Sun:

TORONTO - Erika Crawford is a beautiful young woman with big dreams — and a terrible disease. The Brantford teen’s dreams include being able to play soccer.The nightmare of her illness is that any small physical contact could cause her a catastrophic injury. Erika, 17, has Ehlers–Danlos Syndrome (EDS), an inherited connective
tissue disorder that among other things is causing her spine to press on
her brain stem and the main artery in her neck.

Brantford Expositor reporter Susan Gamble first broke this story. “I was told there was absolutely no cure or treatment available,” Erika told Gamble.

If she twists her neck too quickly it can cause her to have a stroke or cause damage to her brain stem that could paralyze her. Erika saw scores of doctors before she finally got the devastating diagnosis in April.

EDS can differ in severity from patient to patient. For Erika it could be deadly unless she gets life-saving surgery in the U.S. with a doctor who specializes in EDS. No doctors in this province are experts in the disease. The operation will cost about $60,000. On Thursday the family got the devastating news from heartless OHIP
bureaucrats that they’ve turned down her appeal. They won’t pay for her
surgery. Erika can’t wait. She’s living in the shadow of imminent death. The surgery is booked for Oct. 9 and the U.S. hospital needs $30,000 on deposit before they can go ahead. It’s disgusting that a government that spent $230 million to cancel
two power plants to save the jobs of a couple of Liberal MPPs, that
squandered hundreds of millions more on Ornge, won’t spend a nickel to
save a child.
Schools and churches are rallying with fundraisers.While health ministry officials insist the surgery can be done here,
those familiar with the complex nature of EDS say that’s just not true. The problem is identifying an Ontario interdisciplinary medical team
and neurosurgeon that’s trained to perform the urgent, life-threatening
and complex surgery that’s required on a 17-year-old girl, says a
spokesman for the charity Improving the Life of Children.

“The family would gladly stay here. This family is facing spending
hundreds of thousands of dollars,” said ILC’s Sandy Smeenk. The U.S.
doctor has offered to come here to perform the surgery and train doctors
in this province. Health Minister Deb Matthews insists the surgery can be performed
here and says about 97% of applications for out of country care get
approved. She said 35 such surgeries have been performed here. “Given that the application was not accepted, I can tell you that
there would be a reason for that and I can tell you that if a child or
anyone needs a procedure, no matter how complicated that procedure is,
and there’s someone here, or a team here who can do that then, of
course, we don’t pay for someone to go out of province when that
procedure can be performed in Ontario,” Matthews said.

That’s no comfort to Erika and her family. On top of the stress of dealing with a desperately ill child, her
mom, Michelle, is frustrated that they must also fight an uncaring
health bureaucracy. She says doctors here aren’t EDS specialists, while
90% of the U.S. doctor’s patients suffer from the condition. “EDS children are totally different,” said Michelle. Erika has
complex underlying complications, such as an underlying blood disorder
and connective tissue problems.

Shame on this government for letting a child like Erika down. They should hang their heads in shame. If you want help, you can donate to Erika at any CIBC branch using the Transit No. 029528490783.

Unfortunately, while millions of Americans find themselves in similar
circumstances when dealing with countless private insurances companies,
Medicare, Medicaid, the Veterans Administration, and many other public
insurance plans, stories such as Erika's become the default response to pleas for a single-payer national health care system.

Clearly, Canada—and the UK—need to modernize their national healthcare systems to account for the complexity and expense of 21st century medicine. Concurrently, those of us who advocate for a single-payer system in the US need to be aware of the challenges facing patients under systems in the UK and Canada and to advocate for reforms that would make single payer national health care in the US a model for the world.

Five Considerations for Supporting People with EDS

1. People with EDS may seem preoccupied or withdrawn even when they
appear to be healthy. The introspection might result from fearful
anticipation about what the future holds, from managing pain, or having
to be careful about all their movements. They may be exhausted and
recovering from exertion. 2. As do most of us when our activity is limited, people with EDS
experience anger. Since EDS is not curable, the anger is something they
must learn to manage. The least the rest of us can do is avoid annoying
them further by refraining from telling them what they need or how they
might cure themselves. Those who live daily with EDS symptoms know what they need and what
to avoid. For example, getting out of the house and sitting in a park
might seem like a great idea to you, but the effort can exacerbate EDS
symptoms and bring your friend to a point of exhaustion. When having a
bad day they will know enough to stay home.

3. Nonetheless, those with EDS like being invited to go out with
their friends. Even if they are not up to accepting the invitation it is
important to feel included. If an activity is one they cannot
participate in having an option of going along to watch will be
appreciated.4. People with EDS can look healthy even when fatigued or in pain,
and their stamina changes from one minute to the next. Activities
enjoyed last week can be impossible this week, and sometimes they must
cancel plans at the last minute. 5. No one likes being told how they should feel, or that someone else
knows how they feel. That is annoying no matter what your health
status, but extra grating when you are ill and hear it frequently.
Support and understanding are what is welcome.

CRITICAL CONSIDERATIONS

Unfortunately, the article fails to fully
discuss the potential for cardiovascular risks and complications caused
by the disorder. To this, we would add the following further warnings:

1. Ehlers-Danlos Syndrome carries
a high risk for stroke, aneurysm, hypotension, mitral valve prolapse,
and Chiari Malformation. EDS patients should be evaluated and monitored
cardiovascular complications on a regular basis. This may include annual
abdominal ultrasounds to rule out the potential for abdominal aortic
aneurysms. Extreme fatigue may be a sign of hypotension, which can be
treated with relatively inexpensive medication.

2. Extreme
hypermobility is a blessing and a curse. Young dancers, gymnasts, and
others with extreme flexibility should be evaluated for EDS, especially
if there is a family history of extreme joint pain, disability, stroke,
migraines, and aneurysm. Dance can be helpful therapy to strengthen the
musculature of EDS patients, thereby reducing the risk of joint
dislocation, however, understanding the underlying reason for
hypermobility may also help to avoid injury and cardiovascular
complications.

3. If diagnosed with EDS, patients and their
families should ensure that all medical professionals that care for them
understand their condition. EDS can seriously affect surgical
procedures and outcomes. Prepared physicians can adjust for this, if
they understand the underlying condition in advance.

Sunday, June 10, 2012

New York – Part of the problem for patients seeking treatment for Ehlers-Danlos Syndrome is that few physicians, let alone the general public, are fully aware of what the disease is; fewer still, know how to treat it. So, when a major news outlet such as CNN provides coverage, the Ehlers-Danlos community is sure to find out.

Unfortunately, CNN.com's "What is Ehlers-Danlos Syndrome?" fails to provide a clear, current, comprehensive portrait of the disease and its sufferers. Instead, readers were treated to some ominously black and white photos of a "bendy person" and her "stretchy skin."

Rather than interviewing numerous physicians, patients, and families, CNN Medical Correspondent Elizabeth Cohen relied on one patient, and one physician, Salman Kirmani, MBBS, a pediatric endocrinologist/geneticist, who is cast as "an expert on EDS at the Mayo Clinic," even though we could not find Kirmani listed ANYWHERE as an author of ANY EDS-related research.

While most of the article was the standard discussion outlining the history, the variations, and the rarity of the disease, some of Kirmani's statements, and CNN's interpretation of his statements, sparked the INTENSE ire of Ehlers-Danlos sufferers. YOU BLEW IT, CNN! Please fix it!

For your convenience, we have bracketed our comments inside the CNN blockquote:

Unfortunately, there is no cure, but Kirmani recommends seeking treatment from a team who knows and understands EDS. [Since so few physicians "know and understand EDS, does Kirmani realize that a team is almost impossible to assemble outside of a major, elite teaching hospital.]

“Even though we have no cure, we can certainly manage the complications quite adequately,” he said. [We know of few EDS sufferers who have experienced having their complications managed "adequately," let alone "quite adequately."]

Managing the symptoms often involves physical therapy to strengthen muscles and over-the-counter drugs for pain. [Many EDS patients cannot tolerate standard physical therapy and mobility issues make it difficult to travel to and from multiple weekly appointments. EDS sufferers were not polite in there reaction to "over-the-counter drugs" providing significant relief from chronic pain.]

Patients with EDS may be limited by their fragile skin or bone tissue –
Kirmani and his team tell patients to avoid high-risk activities - yet
the majority have a normal life expectancy. [Overall, EDS patients may have a near-normal life expectancy. But, patients with the vascular type, often don't make it far beyond 40. Readers were incensed by this lack of understanding and distinction.]

Ultimately, CNN's article does more harm than good in that it perpetuates the misconception that Ehlers-Danlos Syndrome is simply a benign hyper-mobility disorder. Worse, because the article was picked up by countless television news partners, the effect of this disinformation will take a long time to erase.

So, for your reading pleasure, we have re-posted the readers' comment below. Please feel free to post something equally scathing to the article comments section right here. Unfortunately, it may require Facebook to post.

sweepsIt's nice to see EDS get coverage on CNN. EDS is a rare syndrome
that receives little attention and it's great for CNN to raise
awareness.
I understand this is a very simplistic insight into EDS, but I want to
point out two misstatements. First, not all types of EDS are autosomal
dominant, which means a parent with EDS has a 50% chance of having a
child with EDS. Some are autosomal recessive, which requires both
parents to carry the mutation for their child to have EDS. Second,
severe pain is a hallmark of EDS -Hypermobility Type. The pain is
chronic and often disabling and over the counter medication offers
minimal to no relief. It is a mistake for the article to imply that EDS
is an easily managed syndrome.

sweepsI have EDS, as does my father, brother and daughter. I had 7
surgeries by the time I was 30, all due to EDS. I need three more, one
for my hip (which will be a major surgery), one for multiple organ
prolapse and a hernia and one for my back, where a vertebrae is too lax
to be supportive. I have arthritis in most of my joints, which can limit
my ability to so much as hold a pencil. I have had severe bleeding
problems after most of my surgeries, and my daughter had such severe
bleeding issues after her heart surgery that it collapsed both of her
lungs. We both have to be followed by cardiologists because our aortic
roots are enlarged (97% and 98% for body size). I have developed
allergies to codeine and vicodin, which makes it extremely challenging
to treat the pain. Even after having 8 screws in my knee, they were
reluctant to prescribe me pain meds stronger than Vicodin. It is only a
matter of time before I will no longer be able to work, all due to EDS.
Go ahead, tell me how this is a well managed disease. I highly recommend
CNN follow up with Dr. Tinkle or Dr F. You need to give the real story.
EDS can kill. You can't get more serious than that.

jeanai am 49 and have EDS vascular my grandmother was 1 of 13 children
all died of aortic disection my grandmother and her siter where the
only 2 to make it to 70 and 71 they died same year 2 weeks apart they
were the last 2 in there family so theres no cure but doctors refuse us
pain meds and tell us we are hypocondriacts i am so glad that i have a
good dr now one who listens and acts accordingly more neeeds to be shown
on medical progames about EDS we with EDS need to get it out there

HumanpopbeadI agree that is great there was some coverage, but the pain was
totally minimized. Many of us are unable to woek due to being on
narcotics. My brother died of the vascular kind and I researched his
symptoms and that of other family members. My parents had the same HMO
since 1969 and they were never diagnosed. They told my mother it was
because she needed to lose weight.
Ends up it appears both parents had different types of EDS. Everyone
thought my mother to be a hypocondriac and I was accused of being a drug
seeker, malingering or crazy until i had the genetic team of ths SAME
HMO work me up only discover, "hmnn that is what you have. ". I believe
many of the high school athletes that die of heart attacks may be
undiagnosed as well. I pleas with all parents...if your children are
extremely limber take them to a genetist to be sure they do not have
vascular issues as well. No such thing as double jointed. If you or your
child are doing party tricks, get seen i mediately. I miss my brother
so much, I don't wish this chronic pain on anyone.
My brother was a Viet Nam vet with a silver star but no one believed how sick he was until he died!Also if you have EDS you may also be at risk for blood pressure issues and dystautonomia (Pots).
We are typically treated so poorly by the docs just because they dont know.
We need med schools to teach more about this RARELY DIAGNOSED syndrome.
Inspire is a great support group where the EDS community can compare notes and get emotional support as well.
There are no guarantees for any of us on how long we live, but we
certainly should all get to have as many pain free days as possible. EDS
is genetic, progressive and incurable. I will never feel better than
today, hardly compares to how you presented the illness...but it is a
start at awareness, thanks.

LisaMy children have EDS and my one son almost died because he had
tumors growing in his throat. He had surgery twice (because it grew
back again 2 years later). We were at the doctor constantly with all
sorts of issues: failure to thrive (despite feeding them well), diarrea,
vomiting almost daily, frequent choking episodes, breathing issues.
Finally we were referred to a geneticist who said my children have EDS!
Each case is very different, you never know how it will present itself
with each child or to what severity.

It is NOT common to easily treat EDS with OTC meds and PT. Unless
you are with a PT that knows how to treat EDS and there are VERY FEW in
the Country. Even they are limited in what they can do. Often that cause
more damage. There are soo many disabling symptoms that go along with
what the short simple article describes. The pain is progressive and PT
can't fix sublaxations and dislocations of toes, fingers, head bones
shifting, ribs, internal injuries, chronic headaches, severe fatigue,,
sensitivity and progressive allergies to medications and pain meds to
start. This is not a easy to handle Disease as suggested in this story.
They are not just freaky party tricks that can be done at will and just
need an aspirin afterward. It does damage to the ligaments, and soft
tissue that is progressive, Can and often does become debilitating and
chronically painful. This article is rather dismissive of the
seriousness of EDS.

william lemaythis article though mostly correct is also obserd I was diagnosed
with eds at a young age and as you grow it gets more and more painful pt
and otc meds stop working and you need real pain meds and dr's help
but today's society puts us off as drug abuser's and hypercondriacts... I
tell you this Id love to not be on pain meds anymore but I walk with my
kids and my hips pop out if I lift heavy objects my shoulds pop out my
wrists kill me everyday and I have random tremors that prevent me from
driving I am only 37 yrs old so please ammend your story as your
treatment is insulting to folks like me

L.AshI agree: this article barely skims the surface of Ehlers Danlos
Syndrome. I WAS a licensed massage therapist with my own practice until
I had a stroke cause by the way EDS affects my spine the worst. I have
multiple herniated discs, degenerative disc disease, AND the EDS was
causing my cervical spine to move too much. This actually causes it to
compress the arteries to my brain- causing mini-strokes. I was at risk
for total paralysis or death and had to have my C1,2 fusion (2 screws
and a rod drilled into my vertebrae) to help stabilize the situation.
Now my neurologist tells me C3-7 are also causing problems and he
recommends cutting them in half, taking out wedges and putting in hinge
screws into the vertebrae. I'm 48. My hips and knees are also having
problems.Yes, I have pain. NO, OTC meds are not always enough. I have
Postural Orthostatic Tachycardia Syndrome- (look it up) many EDS
patients do too. MANY adults, teens and children are suffering terribly
with this! My 2 kids have it. My teen daughter suffers with SEVERE
debilitating pain every day of her life. She is unable to go to school
full time. She had to drop out of all her sports. The neurosurgeon is
recommending decompression and fusion for her CHIARI (brain settling on
her spinal cord- kinking it- platybasia (which is bad). He wants to take
out part of her skull, and then screw the skull to her top 2 vertebrae.
My son used to play soccer, and run track. Now it is all he can do to
get through a day of college. I know many families in the FB EDS
community who are dealing with MAJOR life threatening situations as a
result of EDS. I know of a young woman right now fighting for her life
because she has EDS and was in a car accident. MY SISTER DIED from a
ruptured aorta in a car accident. I know now that she too, had Ehlers
Danlos Syndrome.
There is NOTHING simple about Ehlers Danlos Syndrome. It is
UNDER-DIAGNOSED, UNDER-TREATED, AND POORLY UNDERSTOOD by most of the
medical community.We desperately NEED major teaching hospitals to step up and spend more
time teaching about this terrible disease and all of its complications.
We need MAJOR FUNDING to work at finding a cure.
I am now a volunteer representative at the Center for Ehlers Danlos
Syndrome Alliance. We are hosting our first conference this coming fall
in Michigan. http:// cedsa.orgPLEASE- help us get more drs to realize the seriousness and the many
complications of EDS. Over the counter medications and physical
therapy???? This opinion is not at all accurate. Check in with Dr. Brad
Tinkle of Cincinnati Childrens Hospital, ask him about all of his EDS
patients and what they suffer with. Check in with Dr. Clair Francomano
out in Bethesda... They both specifically treat EDS/genetics... they
know the level of suffering EDS patients go through.
EDS patients are some of the bravest, toughest, and compassionate people
you will ever meet. They look 'normal' on the outside, but inside they
are dealing with much pain, GI issues, blood pressure problems, nerve
problems, etc...and yet WE GO ON.
If you want to see hundreds of people with EDS- go to YouTube and type
in Ehlers Danlos Syndrome . Some of them just show the hypermobility-
but there are many of us who are suffering terribly.
If you know someone with hypermobility, chances are you actually know
someone who has EDS. They just haven't been diagnosed yet- because the
drs haven't been trained to identify it.
CNN- PLEASE. This truly is a situation that needs much more attention.
Don't let someone tell you PT and OTC meds are enough. It's not. I am
an administrator of the largest EDS community on FB, and administrator
in several others. Our members suffer 24/7 and I really hope that you –
CNN- will be able to step up and BE PART OF THE SOLUTION to training
more drs to adequately treat EDS, and to helping patients get to those
drs.
Thank you for trying. I do appreciate it.
Linn Ash, http://cedsa.org

L.AshI would also like to add this information: in the FB EDS
communities I am a member of- I would guesstimate that 85% are unable to
work due to the symptoms that come from EDS and its accompanying
conditions. I personally do not know anyone who is unable to work
because they are on narcotic pain relief medications. But, having said
that- there is such a negative social stigma on people who need
narcotics. So, it is possible that some people do not discuss their
needing them. There is a conference on pain management going on today.
Pain management is a huge problem for the EDS community, because of the
fear so many drs have that their patients 'will become addicted'. For
many EDS patients- pain medications are the only thing available to help
them get out of bed and live life!Believe me, they have tried to 'push
past' their pain. they HAVE sucked it up and tried to ignore it. Think
of the last time you sprained an ankle, or a wrist. Do you think you
could deal with knowing you were going to have that happen all the time
to any joint in your body at any given moment? That you were at risk for
it EVERY DAY? and that the sprain was going to take months to heal? If
you take away the pain medication, and you do not have cures or
treatments that work for a horrible disease, THEN YOU HAVE TAKEN AWAY
ALL HOPE. EDS people want to live. They want to move. But- their bodies
fail them constantly. Every day can bring a new disaster. So- until
there is a cure, or a treatment to stop the progression, or effective
medications to stop the symptoms, the EDS community needs the medical
community to wake up and learn about this condition. The numbers of
people dealing with this condition are grossly underestimated.
For our personal family situation- my daughter and I also deal
POTS/dysautonomia, another accompanying condition of EDS. Some of the
symptoms of POTS- postural orthostatic tachycardia syndrome, are rapid
drops in BP, high pulse rates, dizziness, fainting, falling down,
fatigue, etc...
Just shaking my head– there are only a few stories shared here so far.
There are so many people suffering. I really do hope CNN will step up
and do what they can to make a difference in our world.
Linn Ash, Representative
Center for Ehlers Danlos Syndrome Alliance
http://cedsa.org

EmmaI have both Classic and Hypermobile Ehlers-Danlos Syndrome. I feel
like this article makes it seem like EDS is easy to manage when the
reality is it's not, it can be very debilitating and disabling. Most
doctors do not know what this condition is which makes finding a "team
of doctors" is extremely challenging and I have yet to find a doctor who
truly understands how to treat my EDS. I'm happy I found a geneticist
who was able to tell me why I have had chronic pain since I was 19 years
old (and I am about to be 24) but it would be nice if doctors knew how
to actually treat the condition. EDS can be extremely painful and and PT
doesn't really do anything for me anymore because as soon as I get PT
done, if I do something like just turn my head the wrong way that half
of hour worth PT is totally "undone" so why bother. A lot of people need
splints and braces to keep their joints in place, which you often have
to have custom made but if you don't have a doctor who knows about EDS,
you have a problem! This article doesn't mention that EDS affects every
part of you, so EVERY part, like your eyes – a lot of people with EDS
have vision problems like severe myopia, cataracts and retina
detatchment . There are other complications like Arnold-Chiari
malformation that can cause all sorts of problems and that's difficult
to diagnose and treat. For me one of the worst symptoms is the fatigue –
I can fight through the pain all day but the fatigue is killer and it
doesn't mention that anywhere and there is nothing and I mean NOTHING
that helps that and I've tried everything. I could go on and on about
what is missing from this article... So while it was nice to see EDS
mentioned in mainstream media, it's disappointing to see this condition
portrayed as just some sort of minor inconvenience that just requires
some PT and 2 Tylenol. I cannot work or go to college because of
Ehlers-Danlos, this condition is much more than just joint hypermobility
and stretchy skin.

Jeneen Castle RoachI and my children have EDS, hypermobility type. I agree with the
statements of alot of the other EDSers on here, This article makes it
seem like its not a big deal and easily managed but trust me, it is not.
My doctors have tried many different meds to control the constant pain
that I have and so far have been unsuccessful because I want to be able
to continue to live and work as normally as possible without the side
effects narcotics and other strong painkillers. I am glad you are
drawing attention to this disease but feel it was taken a bit lightly

NovemberRainI have 'mild' EDS, and believe me, physical therapy and some advil
are not adequate treatment. I consider myself supremely fortunate that
I am still able to work (I need to work to have the health insurance).
I have been in serious chronic pain for over 20 years. As a child I
had more dislocations, falls, injuries and sprains than a child should.
My first dislocation was my shoulder while still in the crib. In my
teens, I tore a cartilage in one knee, and I think because of that, I
started being 'careful' and not doing a whole bunch of stuff I'd rather
do. Pain hit at about age 28, and has only let up once or twice since
then. I can no longer take ibuprofen, because my stomach can no longer
tolerate it. Can't take proton-pump inhibitors for acid reflux because
they give me a nosebleed. I cannot get a prescription for eyeglasses
that actually facilitates my seeing because my eyes are completely
unstable. Prescription works one day, and not the next. Collagen is the protein building block of connective tissues, and
ours is not right. Connective tissue is present in almost every
structure of the body, that's why it affects everything. I wish it was
as easy as 'finding a team' of docs who could help. I go to a major
university medical center, where it seems everyone has the most mild
acquaintance with the concept of EDS, but no one is interested in
actually helping. I do appreciate that CNN has posted this article in May, EDS
Awareness Month. And I also appreciate that we are able to respond with
a more detailed and personal experience.

WellsickThank you for the attempt at educating others about EDS. Sadly,
there were inaccuracies, as others have pointed out. When you wake up
disappointed that you have to face another pain-filled, brain-fogged
day, watching the world go by without you, then you will understand what
it means to suffer with Ehlers-Danlos Syndrome. Next time, please
research, then report.

TwistingTriangleWellsick, you nailed it. CNN's reporting was under-researched.
Ehlers-Danlos Syndrome (I have type Classic or I&II) is
underestimated and overwhelming. For every woman reading this who's gone
through the pain of childbirth, apparently, you've not tasted real pain
(never mind every day of your life). Ehlers-Danlos Syndrome is sudden
injury, medical bills, prescriptions, co-pays, feeling less-than,
constant doctor visits, being doubted – "you don't LOOK sick...", gross
amounts of pain and living a compromised life. With no cure. I'd
prefer to see EDS not addressed at all then get glossed over in the
media.

mutant-robotAs with the other comments, thanks for the continued attempt at
educating about EDS. I hope you are as mature as the editors/writers at
Maxim and publish a second article that is more accurate. Perhaps talk
to a person living with it (nice of you to mention Gioia & post some
"nifty" photos of her, did you ever talk to her?)Your article really does over simplify. Granted, there are so many
complications with the many different types of EDS that it would be hard
to fit into one article. I'm not sure how many EDS patients the
specialist you interviewed has worked with, but I'm interested in
learning more about how they are able to "manage the complications quite
adequately"- as my team has a geneticist, pain management,
cardiologist, hematologist, PT, OT, 3 different orthos (they all
specialize in a different area of the body- heaven forbid anyone could
treat me as a whole), gyno, orthotics specialist, allergist, along with
my PCP that all usually tell me "sorry it is genetic so there really
isn't anything we can do." OH, and I should have a neurologist and a
rheumatologist however none in the area are willing to see me as I am
"out of the scope of their practice." EDS is a genetic disorder, while
"managing" is all the best of us can do- each of us presents very
differently and our symptoms can vary from day to day. It is horribly
frustrating for both the person living with it and the doctors that are
willing to take us on as a challenge.

AndreaAs been stated – it's nice to see an article about the condition
that totally derailed my life, but I believe this article causes more
damage than educates. If you are going to do something, do it right.
Maybe next time you want to write about a health condition try
interviewing the people who live affected by it an not just the doctors
who read about it from other misrepresentative articles.

sick sunshineThanks to CNN for bringing awareness of EDS to the public. I have
EDS hypermobility type, as do both of my sons. We are each affected
somewhat differently. What is not different is the chronic and sometimes
severely acute pain. Even with the NIH information, my PCP still
doesn't quite get it. I have other illnesses as well, so sometimes there
is no way to figure out which illness is causing pain at any given
time. I'm way past OTC medications. Have tried many medications –
sometimes opiates help dull the pain enough that I can deal with it.
There is a lot more information available now via the internet. When my
youngest son was diagnosed, the only thing he was told was to avoid
contact sports.

AngieAs stated several times above, thank you for bringing awareness to
this under-diagnosed disorder. I also agree with the other commenters
that the pain associated with EDS was definitely minimized!

I am 34 & was JUST diagnosed 7 months ago after a lifetime of
being told I am "double-jointed," just bruise very easily, etc., and to
date have had 24 surgeries, 23 of which were EDS related! EDS is sadly
often misunderstood, which often leads to someone not being diagnosed
until an older age. My real pain started when I was 20, when I was
diagnosed with early-onset osteoarthritis, which is very common with
EDS. Fast forward to today, & I live with chronic, debilitating
pain, which is ALWAYS there, 24/7 no matter which prescription pain
meds. I've tried. I also live with 2 types of heart disease, another
common EDS problem, which killed my father when he was just 49! My list
of associated medical conditions is very long (which is often the case)
as EDS affects the entire body.

My children, ages 8, 12, & 13, are also being evaluated for EDS,
& each of them have pain as well. My 12 year old's condition is such
that she is now physically restricted from doing ANYTHING that normal
12 year olds do... No running, jumping, playing, no gym class, etc., as
some of her organs are affected in a way that an injury could cause
death.

Ehlers-Danlos Syndrome is a very serious disorder!

I hope that those who read this article, take the time to read the
comments & also visit the Ehlers-Danlos National Foundation's
website to learn more. The EDNF also has a Facebook page.http://www.ednf.org/index.php?option=com_content&task=view&id=1348&Itemid=88888969https://www.facebook.com/pages/EHLERS-DANLOS-NATIONAL-FOUNDATION/294028895335

MeriLizzieI concur with all of the above comments. While it is nice to see
an article during EDS awareness month, this article oversimplifies EDS. I
have a rare mix type. Mix of Classic, HyperMobile, AND Vascular. My bio
brother (we were adopted into same family) does as well, he has one
symptom I do not. Extremely stretchy skin. I wasn't diagnosed until I
was 32. I'm going blind and have severe osteoarthritis in both hands.
I'm 36 and have lost most functional use of my hands. I nearly bled out
giving birth to both my girls. My worst fear is being in a car wreck. I
often wonder… if someone HAD listened to me about the pain would I still
have use of my hands? Shoulda Coulda Woulda. Doesn't matter now. It is
what it is. I'm thankful for my online community through FB and twitter
that help me cope daily.

T. OwensThank you so much for doing an artical on EDS! I think if you
speak to a true expert in EDS you will find a different response from
your interview. My son is 8 he has had to have 8 surgeries already. His
diagnosis consist of EDS hypermobility type which does not have to be
extreme, POTS, Hypermotility, sensory processing disorders, GERD, soft
throat, and chronic joint pain. He subluxes his shoulders and knees. He
also has changes in his neck as well. The hardest part is getting proper
medical care close to home. Many people have to travel out of state to
see a true expert in EDS and it takes forever to be seen due to the fact
that others with EDS see this person as well. I am lucky to have a
doctor that doesn't know about EDS but willing to learn and will do any
test I request. My son's PT dismissed him as a patient , reason
being... " this is the best i can do for your son and he will have no
further improvements". We need help and we need for more doctors to
become educated in EDS which includes Radiologist. My son had problems
since birth and finally got a dx of EDS when he was 7. 7 years of
fighting and illness. I was the one who did the research and requested
him to be tested for EDS. Thank you again for doing this artical and
giving us a voice.

NancyWhile I am glad to see CNN do an article on EDS, its such a shame
that a major media organization does such lousy fact-checking. Articles
like this generally do more harm than good. There's no use in "raising
awareness" when its misinformation, because most people, and DOCS are
already misinformaed. 1. Not all forms of EDS are dominant. Just because
the three most common are does not mean the "many more kinds" are. 2.
OTC pain meds are not a "treatment" or "management tool" for EDS. One,
we have EDS. Advil's going to rip a hole in our GI tract sooner than
later. management generally starts for many with meloxicam (for those
lucky enough to be diagnosed early) and progress to any variety of
anti-sezuires, narcotics, analgesics depending on what works for the
individual. 3. Some do have very normal life spans (If you want to call
it a life), however there are many heart, bleeding, bowel, GI, and
vascular complcations that can cause serious and fatal issues. EDS is
not taken seriously, by doctors, the media, or the general public in
part due to misinformation like this. Its very discourging for patients
of this condition to see articles like this.

JenCNN, nice try. However, you didn't speak of how debilitating and
deadly some forms of EDS are. You also didn't discuss the disability
that hypermobility causes, nor how people with Vascular type rarely live
into their 40's. I agree that more people need to know about EDS, but
lightly discussing it doesn't help matters. Nor does dismissing it and
something one can deal with with a little PT and medication. It also
didn't discuss how many surgeries many of us have been through because
of easily tearing skin, hypermobile joints or aortic ruptures. Finding a
health care provider with any knowledge of the disorder is almost nill
and EDS patients find themselves constantly having to educate health
professionals about EDS. I would have hoped that your reporter would
have actually looked into these group of disorders more than they
obviously did. Shame, CNN, shame.

JoyI, too, am glad to see EDS in an article on CNN.
Sadly, this just adds more fuel to the idea that those of us with EDS are exaggerating our symptoms.
I'm imagining the comments I'll get from friends and relatives - see,
all you need to do is have some PT and some ibuprofen and you'll be
fine! It's difficult enough dealing with EDS on a daily basis and
having to explain my braces, cane and handicap parking. While pregnant
with my second child I had to use a walker as my ligaments were so loose
I literally was not strong enough to keep myself upright and walking.
My legs buckled and the walker was a better choice than crawling around
my house as I had been doing. My daughter is 10 and has never had a
mother who could run and play with her. Unlike the photo presented, I
don't have excessively stretchy skin. I will be 48 this year and have
been on Social Security disability for 8 years. The occupational
therapist at my hearing said he could not think of anything I could do
at all for employment for any length of time. I wish this were a more well-written comment on the article. Sadly,
the tropical storm in Florida is causing an incredible increase in pain
and in dislocations and I'm just not up to thinking hard enough to write
better. Please provide some kind of disclaimer about this article not being
the case with many people with EDS! No one article can cover all types
of EDS and symptoms and this one is just doing us a disservice!
(I have classical EDS, as does my father, my brother and my 10 year old daughter.)

Debbie McQueenEveryone w/life altering and disabling chronic illness and
degenerative disease wants to get better and regain the function they've
lost. Some want that badly enough that they are willing to do whatever
it takes. For me, that entailed stepping up to the plate, doing my own
research and assuming responsibility for my own healthcare, something
that sets me apart from most others. In that sense, I'm a zebrelephantt
even among my own kind.
Call me nuts, call me crazy but I got my life back and that's
priceless! If I can do it, others can, too! Where there's a will,
there's a way. And as I always say, better late than never.It took me 30 years but I found the gene responsible for my family's
EDS3 along w/the connection to dysauntomia and mast cell disease. In the
process, I learned how to put most of our symptoms into remission – all
without drugs or surgery.. Identifying root cause is key to finding
the most effective treatment, which is imperative to halting progression
of the underlying disease process and preventing further complications,
By the time I figured it out, I had developed 10 different rare
metabolic disorders, all complications of the same inborn metabolic
defects having been overlooked and insufficiently treated for most of my
life.. Taking this approach has changed my life. I went from being a
pathetic invalid, in constant agonizing pain and unable to care for
myself, to resuming my passion of farming. We were able to reverse my
son's early onset dementia in 5 months and his lifelong bat wings (hyper
extensible cheeks) even up and resolved. As a result, our quality of
life has improved expotentially! I took the time to write up my findings and make that information
available in the spirit of helping others. Folks now have a choice. If
they're not happy w/the level of palliative care they're receiving,
they can now opt for recovery. If I can do it, others can, too. The
work's been done. All one has to do is act on it. Testing for MTHFR
polymorphism can identify those who stand to benefit from treatment.
Treatment is mutation specific. Although I did all this myself, there
are doctors available now who specialize in MTHFR and can help w/testing
and treatment. As long as you do what you've always done, you'll
continue to get the results you always got. Time for a change???http://www.mthfrheds.com Please feel free to share! And help spread the word: EDS3 is metabolic! EDS3 is treatable!

OldTexanI agree with you completely, sometimes we have to boldly go where
others have not if nothing else just to be able to go out swinging
instead of letting EDS take us out without a fight. I found out what you
did in an accidental way, I was getting prolotherapy and getting better
and I did not know why, I just thought it was the prolo. It turns out
that the doctor had added some hydrocobolamine to the solution and by
upping my b vitamins allowed my body to start healing.After finding some b12 blogs last week it all started making sense
and like you I agree that if we can learn the precise combinations for
the vitamins and minerals for each of us EDS will likely be a thing of
the past in a few years.It is a shame so many are quick to be hateful of those wanting to
share helpful information but I know that I have been called names and
accused of promoting quackery so I know you have probably seen your
share of haters also.But look at the bright side, with HEDS being the prevalent type and
if this helps 700,000 people in the future it was worth getting raked
over the coals a little bit.I Love your webpage and thank you for the hard work and heart you put into it!

PTFWhile it is nice to see EDS awareness, it is very important to
point out that EDS kills. One aspect of EDS is compromised muscles and
ligaments. The muscles and ligaments in my neck, could not support my
skull, which then caused a "pumpkin on a spike" type of effect, with my
skull coming down into my spine.My brainstem became bent as a result of this, and the brainstem is
responsible for autonomic function. Imagine for one minute, what can
happen when your brainstem is bent. With EDS, it is imperative for you
to be imaged upright, to see the effects of gravity. A supine mri
clearly will not show the extent of how things look.I had to have my skull fused to halfway down my neck, to help restore
brain anatomy. During the same surgery, I had to have my brain
decompressed b/c my brain was sliding around in my skull and slipping
into my neck, blocking flow of cerebral spinal fluid and compressing the
brainstem.With EDS something is lurking around every corner. It is a lifetime
of managing very serious symptoms and problems. Now we are moving onto
my heart (b/c that too is a muscle that becomes affected), and
addressing those problems.The hardest thing to accept about EDS is how my two children are
affected so young. It is quite scary! Somehow I made it to mid-life
before I started becoming "unglued," but my 6 year old has already had
two neurosurgeries, and the writing is on the wall for my 12 year old. Ehlers Danlos Syndrome is something that we are hearing a lot about
lately, and that is GREAT.....but unless it is being portrayed like it
should be, the awareness will wind up hurting us more than helping us.

Mark MartinoWHile it is wonderful to see coverage of the largely-irgnoed
genetic disorder Ehlers-Danlos Syndrome, it was a shame you missed the
chance to truly be helpful, and instead passed on several odd
misconceptions. First, it is not diagnose according to severity of
symptoms; in 1997 a very clear set of diagnostic criteria were written
(the Villefranche nosology, http://www.ncbi.nlm.nih.gov/pubmed/9557891).
Second, many of us cannot manage physical therapy at all, and those
that can, need to be approached by a newer form. Traditional physical
therapy can actually injure a person with EDS. For many of us, too, OTC
pain medications are off-limits because of associated bleeding risks and
digestive track problems. And finally Vascular type is a
life-threatening form that takes too many of us early in life. While your article was welcome, my concern is that it will lead to
continuing inadequate and superficial treatment. EDS is no pleasure to
have, and the answer to treatment for this potentially horrific disorder
is not a pill and some exercise. You can easily get in touch with
Ehlers-Danlos National Foundation, the leaders in information for EDS.
We can help you discover the truth about Ehlers-Danlos syndrome.

"More than 1.5 million people around the world have Ehlers-Danlos
syndrome (EDS). Someone with EDS is born at least every half hour, and
many won’t know what’s wrong with them until it's too late for them to
be helped. EDS occurs in between one in 2,500 and one in 5,000 men and
women, of every race and ethnicity. EDS was named less than 100 years
ago, and it remains largely unknown. Recent evidence indicates it may be
one of the most under-diagnosed disorders, because there is no cure and
many doctors consider EDS too rare for anyone to have. They fail to see
that diagnosis is important, not just in accurately assessing how many
have EDS, but in getting help to their patients for the many problems
known to be caused by EDS.

"Ehlers-Danlos syndrome is a group of disorders, each the result of a
unique collagen flaw. Each type of EDS is defined as a distinct problem
in making or using one of the types of collagen. Collagen is used by
the body to provide strength and elasticity to tissue; normal collagen
is a strong protein that allows tissue to be stretched, but not past its
limit, and then is safely returned to normal. WIth badly built or
processed collagen, some of the soft tissue can be pulled further than
is safe, causing damage. Collagen is the body's most abundant protein
and can be found almost anywhere, in skin, muscles, tendons and
ligaments, blood vessels, organs, gums, eyes, and so on. "Vascular Type EDS is particularly destructive because of potential
arterial or organ rupture; life expectancy is shortened with a majority
of individuals living only into their forties. Arterial or intestinal
rupture commonly presents as acute abdominal or flank pain that can be
diffuse or localized. Spontaneous arterial rupture is most likely to
occur in a person’s twenties or thirties, but can occur at any point in
life. Cerebral arterial rupture may present with altered mental status
and be mistaken for drug overdose. Mid-size arteries are commonly
involved. Arterial, intestinal, or uterine fragility or rupture usually
arise in EDS Vascular type, but should be investigated for any EDS
type."
https://www.facebook.com/notes/ehlers-danlos-national-foundation/what-is-ehlers-danlos-syndrome/10151543135885657

featherbirdladyThank you, Mark, for writing such an excellent article (as
always). Am EDS Hypermobility Type and have three children with same and
a grandson, as well. Seems to have originated with me, oddly enough, as
no other members of my family have it. Am not so easily managed with PT
and OTC pain meds, but we are working on other alternatives. Here's to
hoping that May isn't the only time people become aware of this genetic
disorder.

DelphicdragonThanks, CNN for getting the name out there, but I am saddened by
the misinformation. If only Ehlers-Danlos was as easy to treat as you
portray. I urge you to get the facts straight about this debilitating
condition and correct the article. I would love it if my EDS was
manageable with over the counter pain medications and PT – like others
have said here, it's not! Collagen is in EVERYTHING in the body, from
the eyes to the heart to the veins. This condition can be fatal! I
suffer through multiple joint dislocations every day and cannot maintain
a normal blood pressure due to Ehlers Danlos. I urge everyone to
check out ednf.org and get the CORRECT information about this disorder
and I sincerely hope that CNN will take the initiative and correct their
article to accurately portray the pain and disability we all
experience.

parsnippetyThank you, CNN, for this excellent feature on Ehlers-Danlos
Syndrome! The media often focuses on the "sideshow" aspects of EDS, like
hypermobile joints and hyperextensible skin, without mentioning the
organ rupture, pain, fatigue, etc. I truly appreciated how you
approached the topic with balance and dignity. The photos in the
accompanying slideshow were gorgeous and evocative, and I hope they will
help put a face on this rare disorder. EDS is complex, heterogeneous, and poorly understood, so it can be
difficult to sum up in a brief article. Overall, I was very impressed
with the accuracy of this piece. However, I'm concerned that, without
context, Dr. Kirmani's statement might downplay the life-altering,
disabling nature of EDS. He said, "'Even though we have no cure, we can
certainly manage the complications quite adequately." Unfortunately,
even with the best treatment modern medicine has to offer, a significant
subset of us are seriously disabled and live with intractable pain.

I would also like to point out some inaccuracies regarding physical
therapy and pain management, because finding appropriate physical
therapy and adequate pain management can be uniquely challenging for us.
You wrote, "Managing the symptoms often involves physical therapy to
strengthen muscles and over-the-counter drugs for pain." It would be
more accurate to say, "Managing the symptoms often involves specialized
physical therapy to increase muscle tone and a multimodal approach to
pain management."

PT for EDS has to be specialized, because traditional PT can actually
cause us further damage. It should focus on building muscle tone before
muscle strength (many of us are hypotonic), and must avoid exercises
that allow us to use our full range of motion.OTC pain medication often is not enough to control the chronic pain
associated with EDS and may not be well-tolerated due to a variety of
co-morbid medical conditions. So, pain control in EDS has to be
multimodal and comprehensive. In addition to prescription and
non-prescription medication, we often use braces, topical creams,
heating pads, cognitive behavioral therapy, massage therapy, trigger
point therapy, transcutaneous electrical nerve stimulation, and much
more.Anyway, thanks again for helping to raise awareness of Ehlers-Danlos
Syndrome, and I'm looking forward to reading your future coverage!

As a physical therapist specialized in the management of EDS, I
concur with the previous entries that it is wonderful to see that CNN
covered EDS, but the story does not do justice to the many patients with
EDS who are either totally disabled, or who are so severely impaired
that they can barely function. I see patients who dislocate their hips
and knees with every step they take. Others have such poor feedback (or
propriocepsis) from the joints in their body, that they may walk
routinely on the outside of their ankles without being aware of it. OTC
medications are rarely effective. Many patients with EDS absorb
medications very poorly; they do not respond well to medications. Even
lidocaine patches are not effective to reduce the pain.

The notion of muscle strengthening is often suggested in the EDS
literature. Patients are frequently told that they need to strengthen
their muscles. A textbook on EDS states that "Individuals often need to
be reassured that the pain will ease, but only when the muscles are
strong and fit and are protecting the joints more fully” and "“it is
often found that the pain is the last thing to improve and only does so
slowly and this should be emphasized at the start of the program.” When I
presented at the EDS conference in 2011, every participant had been
told to "suck it up", exercise and not complain about pain, as the pain
would decrease as they would get stronger. Not a single person in the
room had accomplished that lofty goal. In my extensive experience with
working with teenagers and adults with EDS, I have never met a person
who was able to exercise with severe levels of pain. A recent Belgian
study showed that the majority of EDS patients (65%) participated in
strength training and only 29% received any manual therapy. The
researchers concluded that in almost 40% of the cases, physical therapy
was ineffective. Strengthening muscles while in severe pain is not the
best way to reduce pain in patients with EDS. Most of our EDS patients
need extensive manual therapy, pain management, and dry needling for
painful trigger points before engaging in strengthening exercises. Add
to that the fact that many patients with EDS have other co-morbidities,
such as Chiari Malformation, and it it should be clear that the
management of patients with EDS is anything but simple. For a personal
testimony of how effective physical therapy can be, see
http://www.youtube.com/watch?v=O30FfkWhsTI.

Dolores LebaMy daughter was recently diagnosed 7 months ago with EHLERS DANLOS
SYNDROME,after having three Heart Surgeries for Svt-Avnrt her heart
rate was as high as 282 bpm,now suffers with POTS-autonomic
dysfunction,that keeps her weak and home alot and missing normal teen
activities.Recently she has suffered alot of pain and swelling in her
joints-knees and shoulders which put her in two cycles of physical
therapy and she has missed gym classes,and two violin orchestra
concerts things she loves very much, and now off summer swim team.This
is a blow to her child hood as it also has brought on serious allergic
reactions to medications and foods that make treating her more difficult
.Gabrielle has a brother and sister who may have it but haven't been
evaluated as of yet.Her Brother has scoliosis and also one Heart
surgery.He too has been greatly affecting with pain and sleepless nights
of agony and illness with no sign of when their life will get better.
I have been ill for 25 years and now this is this missing piece of my mysterious puzzle-EDS -HYPERMOBILITY.
Please let there be cure soon as children are suffering lifetimes of
illness with no way out of their own bodys pain and endless
suffering,and loneliness.

BuffyThank you for your coverage of Ehlers-Danlos Syndrome. However, I
must disagree with your statement that EDS can be managed with OTC meds
and PT/strengthening. I am disabled from EDS and have been unemployed as
a result for the last two years. I had many years of education, having
obtained one Master's degree and almost completing another. This
disorder has robbed me of my ability to work, as I am barely able to use
my right arm, have a torn tendon in my ankle, and extensive spinal
damage and arthritis in all 3 sections of my spine. I have had many
surgeries, and have been in PT for the last eleven years. I have
headaches, pain, nerve damage, and great loss of function. I have been
told by doctors that EDS does not cause pain. I have high blood pressure
due to pain. I am usually at a pain level of 8, even with pain
medication – pain medication that has been stopped on several occasions
because, as I said earlier, doctors are of the opinion that EDS does not
cause significant pain. I appreciate CNN's coverage of EDS, but I wish
the portrayal were more accurate and more descriptive of people like
myself and others I know. I have yet to meet someone with EDS who does
not have significant pain.

CNN needs to take this article down. This doctor has no
experience with EDS and makes it sound like this it's psoriasis or
something, when it's incredibly debilitating and misunderstood, as this
doctor shows us with his ignorance.

MarionI found this article quite interesting in several fashions: 1) the
amount of information in the comments far outweighed the original
article; 2) the stories posted in response reflect not only the physical
pain that EDSers commonly experience but the depth and breadth of
psychological and social trauma associated with misinformation; 3) on
the heels of Memorial Day, it's important to note that many of our
troops and veterans suffer with EDS in one fashion or another (myself
included – vascular type) and it was in the military that I was lucky
enough to find myself at Johns Hopkins getting the dx that I needed
(after several muscle/arterial ruptures in the legs and family history
were analyzed) – that care however – is not afforded to everyone so
spread the word, ask the question of your doctors and share information
from University of Washington/NIH/EDNF; 4) finally, I'm blessed to be
here today yet tortured that I'll not have accomplished all that I
need/want before I pass on.
Gratefully, EDSers are strong in community, patient advocacy and
education in their own right. I'm blessed to not live in chronic pain
like many of my compatriots but not unlike others I live in fear that
I'll go too fast, too hard, and try too much and face another
complication. Alternative therapies may help in lieu of (in my case,
the allergies, cramping, and even bruising have been minimized) or
alongside allopathic therapies, I wish the best to everyone and hope CNN
continues to investigate and provide well-researched articles in the
future.

Dee NeeBTW, how is Gioia learning? Regarding the articles statement:
"photos of Gioia as she learns to deal with the condition". Maybe
fellow EDS sufferers (oops, or is sufferers too strong a word from the
way EDS is portrayed in this article). I can't figure out what the
'learning' is by looking at the photos. I'd love to know because it
sounds like a 'cakewalk' for her and the photos are quite engaging. Oh, and I grew up without a mother. She died of organ rupture when I
was 1. I watched my grandma have to sit trapped in a chair for many,
many years. She couldn't move her arms to dress, wash her hands,
nothing. The pain must've been so awful that she was unable to move her
arms and they both 'froze'. PT is encouraging that I move my arms to
prevent that. What an 'aha moment' that was. I mention this in regards
to the milder symptoms that are cited in the article in reference to
past generations. Yeah, milder. Sure. I hope they were milder for my
family because I would hate to think they had to live through this
debilitating mess. At least my mom died when she was 26 and, to my
knowledge, her body wasn't betraying her daily and her organ rupture was
sudden and completely unexpected. I grew up with no mother. Oh, btw,
my grandma was very stoic and known as a 'tough old bird'. She
ultimately ended up with late stage cancer – WHICH I SUSPECT THE ONLY
WAY SHE DIDN'T KNOW SHE WAS THIS SICK WAS DUE TO THE CHRONIC DAILY PAIN.
She was a nurse and it just doesn't make sense that she didn't know she
was so 'blown out' with cancer. I cannot detect when I am sick due to
the many layers of pain, nausea, suffocating exhaustion that I
experience daily. Even when I do actually vomit, I feel confused about
whether or not it means anything. I've awakened in the night by my
nausea and been forced into the bathroom to become ill. I ignore it and
hope that it is nothing serious. My mom said she was fine and just had
the flu – then she was dead. We're not wimps! Though many doctors
prefer to behave towards me as though I am: a hypochondriac, pain med
seeking, wanting attention, a pain wimp, a liar, an exaggerator, etc. I
don't have much left beyond my integrity and this type of treatment
'cuts deeply into the bone' of my decency of character. I find it
highly aggregous and profoundly offensive! I've had babies with no IV
and no anesthesia whatsoever. I know pain and, if I am telling you that
I am in pain – then it is likely far worse than I am stating!!! And,
NO, I will not take narcotics – I want more function versus less that
pain meds will afford me – plus, my stomach has never ever been able to
tolerate even the most modest of medications. What, just drug me to
shut me up? Catch 22 – why, yes yes – it is!The doctor in this article sounds like he holds the 'quick and easy
fix' for any and all EDS sufferers (oops, is it ok that I use that
word). He should publish his studies and educate/enlighten us all.
I'll bet all affected by EDS would travel to him for his CURE! Believe
me, there's a market for his OTC cure. This has had a devastating
impact on several generations of my family and I'd like to know the
simple fix. BTW, I hope it's an OTC that my digestive tract will
tolerate since I spend a good amount of time trapped with my toilet –
but I'm sure there's an easy cure for that too, right? I experience flu
symptoms EVERY DAY, cure for that? I'm not even willing to waste my
time going into all of the hideous symptoms because it is so many and
they are of such severity. I'm just glad to know that there is OTC tx
that is fast and effective. Maybe it'll fix my heart too. Where to
purchase and how much?Oh, and what is Gioia learning in her pictures. I want to know how
to deal in a nonchalant manner – like it's nothing. Believe me, I've
tried and was quite successful until it really 'hit the fan' for me!

cindyh@new.rr.comThe comments from others with EDS are reflective of my
experiences. I've had over 40 surgeries from the collagen defect in my
tendons,ligament cartilage. I have multiple joint dislocations daily..
OTC meds are useless in addressing the resultant pain......think how
your joints would feel. How I wish EDS was as simple and innocuous as
this article portrays it. I lost the dearest friend to EDS. She was
diagnosed with the hypermobile type.....but on her sudden death it wad
found to be the Vasular type. In less than a year her son died also.
I have classical type and multiple small aneurysms on the
abdominal.arteries......this is not a disease to take lightly!!!!

Dee Neehttp://www.youtube.com/watch?v=8Q-IZD1JvlU&feature=related ,
copy and paste this is informative and highly applicable (in my opinion)
to what EDS is like. The person who compiled this appears to have
complied in and posted during EDS Awareness Month of 2011 (last May).
THIS ONE IS A VERY EASY TO UNDERSTAND ACCOUNT OF MANY ASPECTS OF WHAT
EDS IS LIKE (in my opinion).I tried to post this, as well as some other thoughts, quite awhile
ago but it 'won't take' so I hope to at least be able to pass along this
link (above). I'll probably give up on trying to post and am not sure
why it's not showing up. Odd. I am aware that there is one post by me
regarding my thoughts toward it being something that is milder with
previous generations. It's a diff post that I seem to be disallowed to
share. Anyway... Please see the link above if you're interested, from a
*lay standpoint, in EDS. *I'm not in any way implying that the creator
is lay, only that I believe it is described in a very simplistic and
easy to grasp manner.

CamilleThank you for the very brief explanation of EDS. As the many
voices have stated it is so much more then just the review that was
written. Life for many EDSers comes to a standstill at an incredibly
young age, and many are recluses because of the chronic pain. There is
no possible way the pain can be managed by OTC drugs, and Physical
Therapy is sometimes more damaging to EDSers then what is led to
believe. Research being done is very myopic, focusing on the Vascular
and not the plethora of suffering EDSers. NIH has been a Godsend for
many, yet Doctors and funding are minimal for them also! It would be
wonderful if CNN contacted the National Foundation and researched this
on a much deeper level. There are a few other groups out there, but this
one has been around for many years and their guidance to help EDSers
would be a great way for CNN to get the correct info out there! Thanks
for stepping up to the plate, with this summary.

BRENDA BRIDGESThank you for trying to address EDS. I had EDS all my life and
only got diagonised 2 years ago at the age or 48. I went to the
Rumatologist for pain. he did numerous test and said that he thought I
had Ehlers-Danlos syndrome. Imagine my surprise since I was previously
diagonosed with Fibermyalgia. I have had pain all my life and was
beginning to believe that it was in my head. I got it from my dad's
side of the family. my dad died at the age of 66. But my grandmother
lived to 90 and was completely crippled with arthritis. She got from
EDS and it over stretching her tendons and liagments. That's whatI have
to look forward to. I have so many problems with my ankle that I have
to wear a brace. The Dr.'s said that my space between the bones was
very small. It was from my tendons and liagaments stretching too much.
Now what? They can't replace them. I live with pain everyday. This
has not been a fun diaganosis but I finally know what is wrong with me.
I am not crippled enough to be diabled. But that is what I have to
look forward too. I work with elderly and they all said you are too
young to be that stiff and sore. They don't understand this disorder
but they have sympathy for my pain. They have similar pain. I would be
nice if you did a indepth article on EDS and the pain that goes with
it. Also the different types and signs/symptoms. Education is the key
to any syndrome and illness.

SmileypeachSalman Kirmani? An "EDS EXPERT AT THE MAYO CLINIC". I am sorry,
I've never heard of him and I know (at least the names) of every Doc in
the USA that is an expert. This article did minimize EDS in numerous
ways. EDS is a tough disease, to survive it with a smile and sanity
takes lots of determination, tons of strength and ooooodles of tenacity
and faith. A great sense of humor never hurt any of us Bendy Friends
either! It's hard to look at it on a positive note sometimes because
it's very painful and highly complicated and misunderstood. I adopted
the motto at diagnosis "If it is to be, it is up to me". I will never
let EDS win. CNN. IF YOU WANT TO TALK WITH A TRUE EXPERT...PLEASE
CONTACT DR. MARK LAVALLEE, he practices in South Bend, Indiana. He not
only is an EDS expert as a physician but he also has this disease and
OVERCOMES it DAILY!!!!!

CassandraI to have EDS and as much as we may talk about EDS and share our
stories on postings like these they do little to help raise awareness or
found research. With all the people I see making comments on these
posts I think there has to be a way to let people know that we are here
and EDS is real, it can't just magically be fixed and its not going
away. I also believe that as a community there should be a way to help
support one another and get support for our families. The hardest part
of this disorder for me isn't the multiple surgeries or the insane pain
the medication didn't help but rather that no one person including my
family knew what I was going through when I was a young person with
EDS....something to think about. EDS is a rare disorder but that doesn't
mean we have to lay back and take it. I we can type on a computer as
seen in above comments then we can help people understand the truth.

Welcome

Ehlers-Danlos syndrome is a rare collagen-vascular disorder that may effect connective tissue, skin, and the vascular system . This site will function as a resource for those suffering from EDS, their families, and the health providers who seek to treat them.